Tag cerebral palsy

All things fitness, mobility and service dog

Angel Ackerman Leave a comment

The last week or so I feel like my strength in the gym (Apex Training) has been dead on– the lifts have come easily and even as my feet/lower body doesn’t cooperate, I seem to get the job done without compromising my other body parts. Andrew, my fitness trainer and strength coach, has been a wonderful support and motivator as life has gotten dramatic and hectic for both of us.

Today I lifted a new PR on bench press– I am up to 80 pounds! As for flexibility and core strength, from my angle it fluctuates every day but Andrew points out a lot of his observations which suggest I am improving more than I might realize. I have noticed that I stumble less, even as my toes drag and my balance falters, knock on wood I have not fallen since Sept. 30.

I have gained back all of the weight I lost, between gin sours and peanut m&m’s and all sorts of chips from the Dollar Tree. And too much pizza! Even with The Teenager home after having her wisdom teeth plus a back molar removed, I’m still eating too much junk– milkshakes, cheese curds, the Wawa chicken fingers and french fries, Macs received for free with minimum purchase of a Diet Coke for me and a Sprite for the Teen all in the name of surgery recovery.

Meanwhile, I can see my muscles gain definition so I know if I’d stop putting junk in my body ALL THE TIME, I could really lean out and have great tone. But the immediate satisfaction of treats and savory, salty foods steals my discipline and knowledge every time.

As if that alone weren’t enough to kick my ass back where it needs to be, I’m starting to believe that the occasional out-of-breath episodes I’m having are symptoms of exercise-induced asthma. My allergies have been bad. The weight doesn’t help. And I noticed more and more that it comes on all of a sudden, even when I’m walking on a flat surface setting my own pace and not with anyone else, and I cannot get air into my lungs until I repeatedly take breaths through my nose and get a breath deep into my chest.

Today, it happened at the gym. I have never had anything like this happen at the gym. I was doing sets of 25 crunches on the exercise ball and really had trouble catching my breath at the end of the set. And I love those crunches! I normally knock them out like a beast!

Light Mobility Service Dog Update

Yesterday I was scheduled to meet with my caseworker at Susquehanna Service Dogs on Zoom. She asked if we could please reschedule for today and as I kept the end of the week open not knowing how the Teen would do with surgery, it worked out fine.

Today the Teen, myself and the caseworker met to discuss what my dog might be trained to do as a task for me, any concerns I might have, and some more updates about my lifestyle. The number one goal I have for this endeavor is to be able to go on walks by myself without fear. I miss my days of going for a 4-mile walk in the morning. I want that piece of mind. The other tasks that I asked for are help retrieving things from the ground when I can’t bend, carrying items I might have in my hand if I find myself struggling for balance, and getting a first aid kit if I need one.

The Reunion Dilemma

Angel Ackerman Leave a comment

Tonight is my 30th High School Reunion, scheduled in the casual and amazing environment of Richmond Brewing. Our classmates own the establishment and have agreed to let us assemble and celebrate without a lot of formal to-do.

But I don’t know if I’m going to go.

I was on the reunion committee. I love the food and the beer at Richmond Brewing. It should be fun.

But I’m stressed and if I’m honest, I’m scared. And I think this is probably the first time I really wished my service dog was already here. Because having that dog would relieve some of the physical barriers to attending, which might help my emotional issues.

I’m already showered and dressed and ready to mingle. But I’m struggling with my own mobility today– which if you aren’t a regular reader I have diplegic spastic cerebral palsy which means I have issues controlling my legs. Last weekend I took a medium fall. I didn’t do any permanent damage, though I did damage my expensive glasses, probably delayed healing of my sprained right pinky, and got myself some nasty bruises and bumps on the head.

But today I fell again. This is is going to sound ridiculous (my trainer Andrew can probably vouch for me here, I think he’s seen it happen) but I can’t pick up my feet today. Primarily my right one. It’s dragging. It got caught in the cracks between the sidewalk and down I went. No damage, my Apple Watch didn’t even alert.

Which is probably a good thing as I’ve been enrolled in the Women’s Heart Health and Mobility Study at Brigham & Women’s Hospital in Massachusetts and when I fall and my watch registers it, they call to check on me. I talked with them for a half hour on Monday.

I fell on the way to the gym, and my workout went fine, although at the same time, I struggled with some muscle control.

I went over to the Christ United Methodist Church for their craft and vendor fair where Joe Swarctz, our fearless illustrator and the creator of Echo City Capers, was selling the latest in children’s books. I didn’t fall, but every bump on the sidewalk or imperfection in the floor challenged my balance.

The Teenager has to work tonight, so I’ll be on my own for the reunion tonight. And I’m scared. It’s about 30 minutes up there, and with my recent layoff gas money is tight, plus I won’t be able to have a beer. And it would have been my father’s 75th birthday today, if he were still with us, so that has me in a horrible, dejected mood.

If I had my service dog, I would feel safer. I would at least feel more secure about my ability to navigate walking. And I would know that I would have another living thing there that could help me if something did happen. I know that all of my classmates at the Reunion would be helpful, but there’s a certain comfort from those who already know what you need and how to help. Because it’s a dreadful feeling when you have an accident in public, and people want to help and no one quite knows what to do or they do too much or the wrong thing.

I’m not sure what to do, but I know the choice is stressing me out.

But if my balance is already significantly compromised, I don’t know if traipsing around an old barn is a good idea.

87% and placated

Angel Ackerman Leave a comment

Tomorrow is my last day at the Stitch Fix Bizzy Hizzy. Tomorrow is my last day, as I told my cat Fog, that my alarm will go off at 4 a.m.

Today, I am tired. My blood pressure seems to have come down, but my ears are ringing and my chest is tight. My workout last night worked out the kinks, and while I am stiff, very stiff, I don’t have any pain and my right leg which was giving me trouble yesterday has improved.

Speaking of my right leg (and hip), I managed to get off the floor from my knees leading with my right leg and not putting my hand on the ground not once but THREE times at the gym yesterday.

But what I really wanted to right about was the fact that yesterday at work was worse than the day before. I was back to table 33, which was the table I didn’t like on Monday. The line itself on 3B seems to catch in that area, so I spend much of the day fixing other people’s boxes as they clog the line. The support post for the line is immediately at my left, which means to put my box on the line, I need to lean forward or back. And every time I need a box, I have to wiggle it around the line.

On top of that, we’ve had a couple weeks of short days, so my body has forgotten how to work eight hours. And I don’t mean that as some sort of funny statement. My body relies on routine, because my lower body muscles can’t relax (that’s what spastic really means) and my brain can’t properly communicate with them (that’s the cerebral part of cerebral palsy; the palsy is the paralysis). So this is like starting a brand new job physically (which reminds me of all the terrifying parts of starting a new job).

On top of that, my meeting with the one person staying with the company that was supposed to talk about disability advocacy within Stitch Fix and how accommodations need to be consistent and fair… Well, while I adore and respect the person I met with… I got the feeling it was about placating me and not making change. The meeting was scheduled for 15 minutes (and is not an amount of time for meaningful dialogue). He listened and performed all the good listening skills. But he didn’t write anything down. He did not suggest a call for action. He did not even say what he could or couldn’t do.

He just basically said I was right and if I needed anything to let him know.

And then his phone buzzed. He got distracted. And he kept looking at his watch. Then he apologized and explained he had another meeting and had to go.

So my requests to write a letter to corporate have been ignored. My requests to discuss this with our human resource department have been ignored.

Needless to day, I went back to my station discouraged and a tad devalued. But that’s how it goes when you’re just a cog in the wheel and in this case, the wheel has been removed from the car and the car is trying to run on three wheels.

(Yes, I know my grammar is bad today with some truly admirable run-on sentences but it’s not even 5 a.m. and I’m exhausted, stressed and emotional.)

My Stitch Fix neighbor has been moved to table 68, so I don’t have her to offer any confirmation that this stuff is happening. And I keep stationed near all the pregnant women who get to request different help based on how they are feeling each day, while I have to advocate for my approved accommodations at least once a day.

I literally left the floor yesterday and went to the break room early when the same person who style carded my fix wrong (if you want to see the video of me tossing the whole fix in the return envelope unwrapped I’ll link it) took my empty cart and replaced it with another, which IS NOT HER JOB, and did not adapt the cart to match my accommodations. She then, seconds after, went to her pregnant friend behind me, emptied the bottom four shelves of her cart which IS NOT HER JOB and is not the accommodation I’ve seen done for anyone before, and then proceeded to help her fold her fixes.

Now, remember Sassy or Spicy or whatever her nickname was? She returned to the medical field, but she was part of our second shift crew. There was a day shift girl struggling after working hard all day. So Sassy helped her. She folded some clothes and gave them to her to scan and box. Sassy was chastised and told IT WAS A GROUNDS FOR TERMINATION. But, apparently, if you are friends and pregnant the rules are different.

Look– I have no issue with these people on a personal level, friends should do nice things for friends. BUT at work, in a large group setting, these small acts of friendship or kindness when not offered to EVERYONE around you regardless of how well you know them, especially if performed by a person in a position of authority, are favoritism. And allowing peers to treat peers differently based on personal relationships is also favoritism.

And favoritism can also be referred to as discrimination, and discrimination against certain groups, like say… the disabled… well, that’s illegal. On the federal level.

I really hoped if I were polite, and filled out all the paperwork, and kept asking, I could get them to listen. I can’t believe at my age I can be that naive.

I did 87% yesterday. And I busted my ass to do it. I almost asked to use my leave, but then I remembered numbers no longer count and it’s my final days of any income. So I suffered. And left in a lot of pain.

But my process lead made me laugh which lowered my heart rate which had been elevated all day. And then Gong Obsessed threatened to take a certain returns binner and his poorly performing peers into a classroom to tutor them in how the alphabet and numbers work, because “it might help them in their next job.”

And I got a craft paper dispenser to bring home, which they gave craft paper away a few weeks ago so I’ve been waiting.

More unintended advocacy and nursing a bruised soul

Angel Ackerman Leave a comment

Three more days.

Three more days and Mercury comes out of retrograde.

Three more days and my tenure at the Stitch Fix Bizzy Hizzy comes to an end.

I had a job interview yesterday that led to a second interview Monday.

And yesterday was the two year anniversary of Parisian Phoenix Publishing, and I found out yesterday that Parisian Phoenix did not make it to the finalist round of the Innovative Voices program of the Independent Book Publisher’s Association.

What do all these things– well, everything but the whole Mercury retrograde thing– have in common?

Me. Still talking about disability.

I’m struggling. Change happens. I get that. But I just feel like everything I’m trying to do becomes a pile of various obstacles, so am I on the wrong path? All summer I felt like maybe I was finally headed toward new beginnings and small successes, but now I have my doubts.

And even things that should be success feel like delayed failure.

I’ve gone over the finalist list for the IBPA Innovative Voices program twice now, and I asked The Teenager to take a look. And she confirmed what I thought. Every finalist is a person of color/BIPOC or representing the gay/LGTBQIA+ community. Not a single disability voice among them. And then the teenager said it, “Well, Mom, color and sexuality are how most places do their DEI.”

It has taken me 40 years to accept and embrace my disability, and now that I have not only accepted it but worked to be a voice of advocacy, I open myself up to a whole new level of hurt.

Which brings me to work today.

Monday my table got moved. Today it moved again. But surprise, surprise, I liked today’s table (even though the air was stale and hot). And then… it happened. Because I was on a different line, I had different support people. And the support person on my line did a very sloppy job of presenting my work. Meanwhile, on the other line, a different support person presented someone else with similar medical accommodations a cart that was tidy.

It might sound petty. But because the company allows each individual to work such situations out with their peers, this leads me to feel like the person who brought me my cart resents having to help me.

And so I went to my supervisor. And I reminded him that all I wanted was to be treated the same. This other person has a temporary (and technically voluntary) disability that has lasted about six weeks. I have been dealing with this for more than a year. I have been disabled and will be disabled my whole life. The person with the temporary disability gets fawned over by her peers– including one peer who literally marches up and down the aisle telling all of us to help her.

So today, she gets the work from the bottom of her cart placed into boxes with pack slips placed neatly on top, and I get my work thrown on top of the boxes which are placed on their side on the top of the cart in a great big heap.

And once again, I ask my supervisor to help me find out if Stitch Fix has a policy in place to promote consistency between disability and medical accommodations. He promises me a chat later.

I go back to my table. A lead brings my next cart, and she doesn’t address my accommodations at all.

When the outbound manager walks by, I mention this to her.

And in the afternoon, I sit down with my supervisor and a manager and we discuss again:

  • how my accommodations have been inconsistent and I don’t receive communication about how or if they will change.
  • how other people with what appears to be similar accommodations receive “better” or “more” attention than I do.
  • how too many people are given the power to make decisions about how their peers will be treated
  • how disability is an issue for any workforce, whether a person has a disability, ages into a disability or has a temporary disability.
  • how Stitch Fix’s approach to inclusion for disability (and their ‘communities’ to support such efforts) focus on mental health and neurodivergence
  • how Stitch Fix has made it difficult for me as a person with a permanent disability, especially since I was moved from the job I was hired to do and they changed how our job performance was measured.

Tomorrow I am sitting down with the health and safety manager for our facility, as he will be moving to the Phizzy in Phoenix. Whether you call it favoritism or discrimination, my experiences have been frustrating. The company maintains that medical accommodations are extremely personal, cannot be policed by leadership, and rely on relationships between peers which assume people will do the right thing.

So, what if they don’t?

I have been working with the same people for more than a year. They know. And I feel like this work-it-out-amongst-yourselves approach has led to people claiming medical accommodations when they don’t actually have then.

Random Thursday nonsense: a trip to the neurologist, strange items brought home from a warehouse, the start of goodbye… and caramel apple coffee.

Angel Ackerman Leave a comment

I feel a little guilty right now because The Teenager has a sore throat and what appears to be the start of an ear infection. It’s a common occurrence for her and nothing says “back-to-school” like an ear infection on a 95-degree September day.

I had a good day, and despite my ongoing sensation of exhaustion (none of us who work at the Stitch Fix Bizzy Hizzy sleep well these days) I am experiencing an emotion I think I recognize as joy. It is bittersweet as I had to say goodbye to two work friends today, and many more will go tomorrow.

Speaking of the warehouse closure, I’m starting to feel unsure whether we are closing a business or a preschool. Today’s free pile included lanyards, insulated branded lunch bags, gift bags, inflatable guitars, bingo cards, and raffle tickets. Yesterday I brought home stickers, pipe cleaners, serving trays made out of cardboard-ish, egg carton material and I almost had a collapsible storage cubby but a random elderly colleague came over, took it out of my hand and said, “excuse me, that’s mine.” I handed it over because 1. I’m not acting petty over free things and 2. I was taken aback (but not surprised) by the gall.

My neighbor whose nickname I can’t recall had the other cubby and she offered hers to me, but I declined. She picked hers up fair and square. And really, I don’t need more random stuff.

I’m going to bounce around in this blog post, but I’ll try to use subtitles.

Sharing my words

So I went to my neurologist/physiatrist today and I gave her one of the Parisian Phoenix books, Not an Able-Bodied White Man with Money. We had talked about it the last time I saw her and she told me to email her the info because she wanted to buy it. No one has ordered that book since the last time I saw her, therefore I thought it was safe to bring her a copy.

She started flipping through it right away. She teasingly chastised me for distracting her, and I told her that next time I would save books for the end of the visit. She also mentioned she had a patient whose wife was considering approaching a breeder about a mobility dog prospect for her husband, and she (my doctor) wanted to know the name of the program where I am on the wait list.

My doctor believed it would be too much expense and too much of an undertaking for this couple to buy a dog and have it trained as a service dog, especially since they don’t even seem confident that a dog is right for them. My doctor suggested looking for a program, and I offered to speak with them if they so desired.

When I left the office, I discovered organizers of the Artful Dash on the Stirner Arts Trail here in Easton reached out via Instagram to ask if they could use photos from my blog to promote this year’s 5K. I, of course, gave them permission.

Medical stuff

Today was my last specialist appointment before my benefits change. My team and I seem to be on the same page, and they appreciate the fact that I pay attention to my body and try to implement lifestyle habits to counteract any health issues.

My gynecologist, primary care physician and my neurologist/physiatrist all agree that some of my current stiffness and bladder issues may stem from a combination of stress and change in exercise habits. Now that my increased sodium intake seems to have eliminated my orthostatic hypotension and decreased my fall risk, I am working on losing weight (ten more pounds off by Christmas I hope) and paying more attention to my urination issues. My current management of my potential incontinence symptoms includes using a toilet every time I see one, and honestly, unless I start having recurrent issues in public I’m not concerned. It could be, my neurologist said, that my theory that my days of bad spasticity means my bladder might be having spasms, too.

And the random tingling limbs so far is not a cause for concern. But, as always, I have a list of symptoms to watch for.

Random Caramel Apple Iced Coffee

We received Wawa gift cards at work last week and I stopped yesterday and got a caramel apple iced coffee. Now, I don’t normally like Wawa’s iced coffee. It’s too weak for me. But the cold brew was a $1 more and I’m cheap.

It was delicious, though I do wish the coffee were stronger and they never put enough ice in there so it’s always warm by then end. Because I don’t normally drink sugary coffee I was buzzed by the time I got to the gynecologist.

7 more days

Angel Ackerman Leave a comment

I wake up at 4 a.m. It’s ridiculously early, but it allows me a bit of writing and thinking time before delving into my day. And the reality is here that I only have to do it seven more times. Some of my friends are leaving Stitch Fix this week, one is done tomorrow. We are all human so some people leaving tomorrow I won’t miss, and many I’ll never talk to again.

Every job loss experience is different– and no matter how much warning you have or how prepared you think you are, it takes a toll.

People will offer advice, or enthusiastically recommend avenues of employment that won’t work. Some people begin to critique your finances, which isn’t any of their business, as they gently suggest maybe you shouldn’t have taken your daughter to the movies last week. (We saw Strays and the Barbie movie, because both have some significant statements on society’s behavior while maintaining humor and also, well, being a certain level of amusingly dumb.)

My daughter started college at Lafayette, and I wanted to celebrate this milestone with her, but we both have more commitments than time and sense. So to sit in the dark together and laugh seemed a good use of our time and money.

My doctor sent me a note that he’s concerned about my elevated cholesterol, total 183, “bad” cholesterol 107, which has me a tad perplexed because it’s been at this level for three years and we all know my diet needs work and has had some recent challenges, especially when I’ve used fast food to quickly raise my sodium levels.

I reviewed my food diary from this summer and there were only two instances all summer where my daily cholesterol was more than 200 mg/day, when the daily recommendation is under 300 mg/day. I think as I focus more on returning to a better weight, as I work to improve my mobility, this situation should improve. Probably more than half my diet is plant-based.

Speaking of health and mobility, Susquehanna Service Dogs sent me my paperwork for my six month check in. Everyone on the wait list must check in every six months.

Today I go to the gynecologist for my annual. Tomorrow I have my final check-in with my neurologist/phsyiatrist before losing my insurance. (We’re going to discuss my increased stiffness and recent reliance on my chiropractor and my urinary issues.) And Friday I visit my chiropractor.

I also received my first shipment of products through Amazon Vine. Amazon contacted me since I tend to leave reviews on the products I buy and offered to make me an official product tester. They asked me to test a purse organizer, which seems a strange product to offer, but The Teenager has put the item to work. We also received a pair of pet nail trimmers, which were very nice, and a bird toy which the cats loved but Nala is not so sure yet.

A day with the firecracker (some fun at the warehouse, and a trip to the doctor)

Angel Ackerman Leave a comment

Work

I came into work today feeling my oats for some reason. I don’t even know why, but I quickly got sassy and playful. I started my day with strong numbers– but immediately I noticed one of my peers running support kept coming into my valley to give her friend work, when she wasn’t really in charge of our valley.

And the work she was bringing her friend was the easy work, the work I’m supposed to have access too and this support person didn’t share any with me. Just took it all to her friend– who has no reason to need the work that requires less bending.

I look around and I see other who have been given the same accommodation I have, but mine have not been adjusted for the day. And I don’t think the person I saw with three carts adapted has official medical paperwork. Yet, I had to trade work with a neighbor because my work did not meet my documented needs.

So I mentioned to my supervisor, maybe we could sit down with P&C (People and Culture, Stitch Fix’s HR department) to offer some final insight that the company does not seem to have appropriate, consistent policies in place to meet workers’ needs when it comes to reasonable, official ADA protected accommodations.

Not even thirty minutes later, the person who brought preferential work to her friend (who is the same person who messed up my fix last month if you were here for that saga) brought another cart of that work to my neighbor, I can’t recall if she has a name in this blog, so I’ll just call her my neighbor and fan (as she is reading my Fashion and Fiends novel series. Please buy books. I am losing my job after all.) My neighbor gave her the nastiest glare, and she walked off the floor and went to someone to complain. Then, she gave me the work.

The person who brought it to her apologized, and my neighbor explained to her very politely that I have documented medical issues. She said she didn’t know, but that’s malarkey because she told me to my face that she would only give me the work when she was certain she had enough for everyone else.

So she knows better, because she was admonished before. Even my neighbor mentioned that is really is ridiculous that every day I have to advocate for myself. And they had a really good system in place in the beginning, but too many people complained that they didn’t think it was fair.

But on the happy side, we had a popcorn chicken luncheon and left work at noon so that gave me a chance to rest before my physical and keep editing Road Trip, the fourth full novel of Fashion and Fiends.

Medical

When I arrived at my primary care physician’s office, half the office had lost power. Mercury is indeed in retrograde. I have lost four pounds recently. My blood pressure is good. I had no new complaints and I thanked the team for being so diligent and willing to listen to me throughout the craziness of 2023.

And to think– salt may have been the culprit all along.

My primary care physician read my neurologist’s notes and called her “smart” and “good” and liked her assessments and her approach to my care. So I mentioned to him that I have two questions I ask every new doctor.

  1. What do you see when you examine me?
  2. If I add you to my team, when should I call you?

This allows me to digest their observations and learn from them and know exactly which doctor to call and under what circumstances.

Then my doctor and I discussed medications, and I confirmed that I’ve felt great since weaning off my SSRI and that my new cardiologist and I agree that once I get through this job loss and transition into whatever else is next we will probably discontinue the beta blocker.

It’s always a good idea, he said, to minimize one’s medications.

I mentioned that I just didn’t think it would be a good idea to have an SSRI, a muscle relaxer and a beta blocker in my system. That’s why when he called and told me to stop the SSRI, I had already been lowering my dose.

I added to the conversation that I knew I had a responsibility to do what I could to solve the problem, because the medical establishment would eventually start throwing more pills at me if I didn’t improve. And that that is not a criticism of doctors, but an admission that I felt something was off so if I did everything I could do to give the doctors more clues, it would hopefully lead to answers.

He paused for a minute, and agreed with me, and basically thanked me for taking responsibility for myself and my health.

The Gym

Today, Andrew tried to cripple me with a leg workout. I can feel him challenging my range of motion and I love it. I did manage to deadlift about 120 lbs.

Everything Wrong with America

Angel Ackerman Leave a comment

I miss my more carefree days– which didn’t seem carefree, until now, when I have several appointments after each 8-hour workday in the warehouse, health issues to sort, a job hunt and debt to pay. Life is never simple or easy for most of us, but 2023 has, for me, felt like eternal optimism and hope while being bludgeoned. I get my proverbial sh*t together, and something outside of my control decides to parachute into my life.

When Stitch Fix announced closing the Bizzy Hizzy, they scheduled all sorts of guests and workshops for us as displaced employees. My separation date is September 15, so I have four more weeks, or two more paychecks, depending how you look at it. One of the workshops Stitch Fix hosted, and paid us to attend, was a visit from the state “Rapid Response” team to explain how unemployment and career services from the state work. They handed us a booklet that told us how to survive our layoff. (Surviving a Layoff: Your Guide to a Soft Landing and a Smooth Re-entry by Harry Dahlstrom. Mr. Dahlstrom, I’m sure you’re a very intelligent and likable person, but your advice is written for middle class Americans with two cars and their own house.)

“Remember that emergency fund with three-months pay stashed away…” Oh, Mr. Dahlstrom. Do you not have a child going to college this fall? Or medical debt? Or a used car that needs constant repairs? Or a teenager whose car insurance costs $500/month because of an accident? That’s just me. Others might have a disabled or unemployed spouse, student loans, bad credit that led to predatory loans for everyday items… or maybe they just recently got this job and had been using their credit cards to survive.

“Reduce your thermostat to 68 degrees.” Oh, Mr. Dahlstrom, mine has been at 64 for two decades.

“Trim your entertainment.” I don’t have cable. I don’t have any streaming services (though the Teenager has Spotify, which she pays for, and she also bought HBO Max and made for the year upfront.) I don’t even have home internet, relying on my phone’s hotspot and public connections. I think the last time I went to a movie was two years ago.

“Prepare a weekly menu” and “put back 10 percent of the things in your [grocery] basket.” Oh, Mr. Dahlstrom. I spend $250 on groceries for myself each month, that does not include the Teenager as she buys her own groceries. And I do get coffee or a donut out, which adds up to about $25 a month, which I consider reasonable as, as you mention, I search for discounts.

Other advice includes: “collect old debts,” “turn unwanted things into cash,” “change your lifestyle,” and “bring in the paying customers” using a talent or skill. Because my half-a-double home that I pay about $900/month for is full of useful items? I haven’t even had a vacation in about five years. And my talent? It brings in about $150/month on a good month.

“Unload the family jewels.” Mr. Dahlstrom, I’m so frugal I wouldn’t even let my husband buy me a diamond for my engagement ring. When we got married, we used Irish claddaghs so all I had to do was switch it to the other hand. I don’t own a single piece of jewelry or any item worth anything. My car is a 2015, my computer is a mid-range model, even my Brooks Brothers suit is 15 years old at this point.

But this is what’s wrong with our country. As a society, we assume everyone “poor” or experiencing financial trouble or unemployment is in that situation because they are irresponsible, stupid or did something wrong. And sometimes that poverty or situational bad luck is due to society’s expectations.

For example, starting with my generation (the GenXers) we insisted that our kids go to college and saddled them with loans to do it. Then, we flooded the market with bachelor’s degrees, which rendered them meaningless, and started pumping up the value of master’s degrees. For those of us associated with the arts or wishing to pursue an academic trajectory, a Ph.D. is now required and some perfectly talented individuals with MFAs are now trapped in a life of eternal adjunct status.

And the poor Millennials also fell victim to this higher education fiasco except the cost has skyrocketed and these poor kids are starting their lives with student loan payments that rival my mortgage and they can’t land a job with a living wage so they work in warehouses with the same people who skipped the education in the first place.

Now, add to that the way the medical system works. In my opinion, and this is just my opinion, more people than ever need some sort of medical support in their life. Whether it be disability, illness, mental health struggles or maintenance medication, it seems like more people than ever spend a ridiculous amount of their income on healthcare.

I have been extremely fortunate that my mathematical brain allowed me to calculate costs and I determined that the free to me high deductible health plan, when you included the employer contribution to my health savings account and a $50 contribution from me to that same HSA each paycheck, paid for most of my medical costs this year (except for my mental health therapist, who for some reason, the medical insurance company likes to pretend doesn’t exist. They just won’t communicate with him or pay him).

Now, before I continue on this rant, I don’t understand why healthcare in this country is primarily connected to employers and employment. Why is it an employer’s responsibility to provide access to healthcare? Eliminating this ridiculous practice might be a good first step to getting healthcare under control. If you meet certain criteria, you can qualify for government-sponsored insurance, which also dictates the level of care you receive, and the open marketplace for healthcare is expensive.

I just don’t understand why everyone isn’t pushed to the open marketplace OR why everyone can’t qualify for government insurance. If everyone went to the open marketplace and insurance companies had to compete for individuals instead of corporations perhaps the access to care would change. In other words– even a company like Stitch Fix– has thousands of employees. If insurance company had to court those individuals and families, they would have to work a lot harder to court them versus convincing one corporation to allow them to insure a large group of individuals.

I missed a month of wages after my hospitalization, which due to the one week waiting period, even with my employer-sponsored short term disability insurance, only provided three weeks of wages at less than 67% of my normal wage, and on top of that the company administering those payments misplaced my paperwork which meant I had to repeating submit paperwork and did not get the last week of those wages until one full month after I returned to work. And my doctor had to submit three sets of paperwork. Which, technically, costs $25 a form for the doctor to submit.

And because I have a congenital and permanent mobility disability, I always need physical therapy. But physical therapy sessions cost hundreds of dollars and insurance companies limit access to them. So I hired a personal trainer and pay him $25 a session (which bless him, he has now reduced his rate to contribute toward my fund to pay for my service dog which is another $5,000) and I bet Mr. Dahlstrom would say I should eliminate that from my budget as an extraneous expense.

But Mr. Dahlstrom, I imagine, does not live with a disability and has probably never experience what it’s like to have a leg that just suddenly stops working or a hip that feels like it’s waving to people from my butt. And since my muscles and my brain literally cannot communicate, I have to physically show them what to do so that movement is reduced to muscle memory and does not have to include the brain.

In closing, I’m going to end this long and winding blog post with a celebration that also highlights everything wrong with America. My friend Southern Candy from Stitch Fix turned 65 yesterday and she asked to go to Shady Maple Smorgasbord. That place was SO BIG, I think my whole d*mn town could have dined together. They had so much food and so many cooking stations I think we could have fed a village from a developing nation for a week.

The staff was amazing. The food was quite good. The gift shop was enormous. And in general, it looked like people were only taking what they could eat. But we all ate too much. I had three dinners and two desserts and spend several hours thinking I might vomit. The cajun catfish and the carrot souffle were my favorite. And I really wanted to punch an old man in the face because as I was reaching for the last piece of coconut custard pie, he snatched it away from me.

And the reality of how much food, how many steaks, how many excess calories we were all consuming filled me with such guilt and shame. Our culture, and you can disagree with me, is so centered on gluttony and selfishness. So while I was happy to spend time with my friend, and take a road trip with her, and laugh with her– I have to ask: how can such a place exist? I’m sure the intent, because Shady Maple started decades ago, was to provide a place where people could dine and have a wide variety of choice and not have to chose, or for families to dine together while pleasing difficult eaters. But this was insane.

I had a bladder and kidney ultrasound today

Angel Ackerman Leave a comment

It’s definitely Monday. You know those Mondays when you can’t get motivated and the day drags on forever? Yup, one of those.

I mentioned to my neurologist/physiatrist that sometimes when my body gives me trouble I can’t feel when I need to pee. She tested my urine to see if I had some kind of infection (and I didn’t think I did as this started more than a year ago). When my urine came back clean, she ordered a bladder and kidney ultrasound.

The test begins with an ultrasound of a full bladder, so I had to drink 20 ounces of water an hour before the test and not use the bathroom.

I selected a facility near work, so I could head over directly after my shift. The lobby was loud, and it seemed like every female patient had a two-syllable name that started with A. And then, an old lady stumbles awkwardly through the waiting room, bent strangely, a heavy purse dangling from her arm and, even more maladroitly balanced below her stomach, a toy poodle.

Yes, a poodle.

She practically falls into the chair at registration, and soon after completely her paperwork, releases the dog on a retractable leash and it’s running all over the lobby. It’s certainly not working, and it’s certainly not wearing the appropriate gear to be a service dog.

The ultrasound tech did a magnificent job and we talked at length about Stitch Fix, my publishing company, higher education and then she asked me about my educational background. Maybe she’ll buy some books.

What makes today a good day might change tomorrow

Angel Ackerman Leave a comment

This week presented many challenges. Monday I was hurting, probably from too much computer work during my 10-hour weekend editing sessions each day. I survived Monday, but barely, only to learn that Tuesday I would be moved to a different station in the Stitch Fix warehouse.

Change is never easy– but in this particular instance, as a person with a documented disability and doctor-derived medical accommodations, I struggle in my normal environment to perform at the same level as an ordinary employee. And that’s my job, to do the work, with a reasonable amount of help.

The main consideration used by management to determine assignments on the warehouse floor is table height. Is the work surface the appropriate height to match the ergonomic needs of the employee? In my case, my performance also relies on which side of the line I am on and who is “on support” that day. I work on “the B side” which does not mean I am not a radio song. It means the conveyance system that moves the fixes to the next stage of the process is on my left side.

I rely on my left side for balance. Therefore, to minimize potential issues with my hip and ensure my balance and stability, I need to work on the side where I turn to the left to put my boxes on the line.

My original table assignment for Tuesday was on the right, or the A side.

Requesting a B-assignment got me moved from line two to line four, which meant I would no longer have my regular support team. (That’s the role of the people who deliver work and supplies to those of us who fold the clothes.) I have been told that it’s my job to remind these folks of my medical needs. And they don’t always like that. So it makes me uncomfortable. Because in my view, it’s not my job to tell someone else how to do their job.

And to make matters more fun, it’s up to the individual to decide how to provide my accommodations. The deviations are small, but the impacts are major. The cart typically arrives with eight fixes on four shelves, with five to eight boxes lying horizontally on top of the cart. Most people move the boxes (I often take them) and pile the work from the bottom of the cart on the top. Some people even put the fixes from the two bottom shelves and place them in boxes on top.

I don’t even ask that pack slips be placed with them. I have myself trained to flip them to match the new order. Which confuses everyone but me.

This particular day, my support person, who I believe is a delight, so this is no reflection of who she is as a person, decided she would place the clothes around the boxes without moving the boxes at all. She tucked them all over the boxes. Which meant if I moved the cart to my station or reached for the boxes, the clothes fell on the floor. How does this help me? Keep in mind– I go through three carts an hour.

I eventually complained to a supervisor and said something like this:

“I know it’s too late now, as we’re closing, but there really should be a system in place where Stitch Fix defines what the accommodation is for the doctor’s orders, because it really shouldn’t rely on individuals who don’t understand the disability. And maybe it’s a violation of privacy, but those of use who need the extra attention should be arranged together so support automatically knows if we’re in that section, we have an accommodation and it would also cut down on people requesting accommodations when they haven’t done the paperwork.”

The supervisor said that was a great idea and lamented that I hadn’t mentioned it earlier. I didn’t mention it because it’s basic logic.

Somehow, I survive, and I make numbers. My body is so twisted I can feel that if I move wrong I’m going to pull a muscle in my lower back. But it’s okay because I have the chiropractor on Wednesday.

And then I get the table from hell on Wednesday. It’s the right height, right side, good support people. But it’s a front-of-the-line table, so I have to keep pushing the boxes toward the end. The fan keeps blowing my pack slips, which means I need to tuck them under my craft paper roll instead of on my laptop keyboard. But I keep forgetting, which means every cart I repeat chasing a paper, and tucking the others under my craft paper roll. My scanner keeps disconnecting from my computer. And if I need to go get a large box, which is common now as we are transitioning into winter clothes, I have to walk to the back of the line to get it.

These things add ten to thirty seconds to every fix. That’s 40 minutes over the course of the day. And I finished at 91% which is bad enough to get me a warning. And so I’m stressing, which tenses my muscles, and since my neurological condition already creates issues with my muscles not relaxing just makes everything worse.

And midday, the leaders got out an inflatable beach ball so every one could bounce it around to each other. That upset me more because I don’t have time to have fun. How dare they think I might be able to survive this and have fun?

Nicole Jensen of Back in Line Chiropractic aligned my lower body and stretched out my legs and I left her able to stand up straight and move my legs without stabbing pain.

This is where the difficult mental part of disability takes over. It’s so much easier to give in, to rest, to eat ice cream and watch TV and be done. But I knew my body needed to stretch and move in order to correct whatever issues had been caused by my misalignment and muscle tightness.

My brain and my muscles don’t have good conversations– so it seems like I can to manually perform a motion for a while to teach my body how to do it, even if that is reminding it how feet go or how a gait is supposed to work. That’s why I go to the gym. Not just so someone forces me to exercise, but also so someone can make sure I am using body parts correctly.

But I have to tell you, I dreaded going to the gym. I had been in pain all day. I wanted to take a hot shower and go to bed.

Andrew texted. He had a situation at work. Maybe the universe thought I needed a break. When Nicole works on me after such bad body pain, I’m often achy the next day.

Then Thursday went fine. Great even. But the pain crept back Friday, not nearly as bad but it took me most of my day to get my metrics at work to solid ground. And Friday night I went to the gym, and despite how I was feeling, I had fun and did well with some heavy weights.

I made some salmon and trendy smashed potatoes with vegan tzaziki sauce for dinner and the Teenager loved it. I fleshed out the writer’s proof for the erotica book. And went to bed feeling like I had been successful.

This morning I got up, discovered I had low blood pressure after I took my beta blocker (oops) and had a light breakfast– coffee with PB2 and cream, PowderVitamin Electrolyte Powder Plus in strawberry cucumber and these breakfast biscuits from Olyra. I thought they’d resemble a Reese’s peanut butter cup or a Tastykake Kandykake.

They were hard, dry and the peanut butter cream was minuscule and didn’t even moisten the cookie. Terrible. And I love their yogurt breakfast biscuits so how could this taste like someone managed to shape chocolate-flavored protein powder into a cookie?

Anyway, the moral of the story is: sometimes what you can achieve one day is much less than what you achieved on a different day.